Tag Archives: DOC

Community.

I speak to you today in praise of the Diabetes Community.

Multi-faceted, multi-talented, multi-country, multi-cultural, it is the living embodiment of selflessness and inspiration. Its accomplishments are many, and its biggest challenges remain to be conquered. For every advancement, every success, failures of our healthcare systems and of our own endocrine systems means our efforts are not complete.

There is much to be excited about. We are connected as never before, through social media and patient-centric organizations. Blogging is still a thing (at least I hope it is), and this community can boast writers that are among the best around at telling their stories of living with a chronic condition. In the past year, podcasting about diabetes has taken off again, and that gives people a chance to hear the latest without actually having to read the latest.

And there are the athletes. Reaching the heights of their chosen sports, amateur or professional, climbing Mount Everest, winning auto races, playing in the National Hockey League. Riding 100 miles on a bicycle, for no other reason than to help raise money for research toward a cure. There are organizations that encourage and help get people moving so they can simply remain as healthy as possible, for as long as possible.

This community is full of passionate advocates, who see a need and try to fill it, or see a wrong and try to right it. Advocates who speak before Congress, who speak before regulatory bodies, who debunk long-established myth and self-serving stigma to anyone who will listen. God bless them. As we break down more barriers going forward, I hope we can find a way to turn our short-term advocacy efforts into sustained, long-term advocacy movements. In the end, a lot of advocacy is simply outlasting those who oppose us.

There are increasing numbers of healthcare professionals living with diabetes, and many who don’t live with diabetes but support us in ways we couldn’t have dreamed of a generation ago. I like how their profession allows them to have both a unique perspective on our disease, and an even bigger motivation to educate all of us about the importance of never giving up on our own self-care.

Yet, there remain difficulties. For every person running a marathon or leading a local support group or participating in a clinical trial, there is someone who lives with depression or burnout that they never counted on when they were diagnosed. There is someone who goes to a doctor once a month to get injections directly into their eyes to help reduce the ravages of diabetic macular edema. There is someone who works hard every single day to even out the roller coaster of glucose readings they see on a continuous glucose monitor. Their issues are not going away, so we should continue to show them the love and support they so richly deserve.

Being part of the Diabetes Community includes things like giving so that children living with diabetes in developing countries don’t also live with a death sentence. For many, it includes occasional happy gatherings full of laughter and hugs and bolus-worthy delights, living life to its fullest. It’s a unique language and an extra set of superpowers that none of us ever thought we would possess, but do anyway because it can literally mean the difference between life and death during tense moments for ourselves or our loved ones.

Diabetes isn’t something that happens to just us; it’s something that happens to all of us. All of us in this community are affected by the successes and frustrations that each of us experience every single day of life with a disease that is with us every single day. It is right that we commiserate in the sadness of a high A1c result or the passing of a close friend. It is equally right that we rejoice together in goals met, children raised, and new technology that makes us safer. Having to live with diabetes is the worst part about my life. Getting to live with diabetes people in my life makes me a better person.

“When I am with a group of human beings committed to hanging in there through both the agony and the joy of community, I have a dim sense that I am participating in a phenomenon for which there is only one word… glory.” – M. Scott Peck

“I have found the paradox that if I love until it hurts, then there is no hurt, but only more love.” – Mother Teresa

Communities are not buildings or monuments or parks. They’re made up of people. Our shared situation and our singular desire to compassionately relieve and delay and eliminate the burden of diabetes unite us as a community in a way few other things can. As each new day dawns, I take solace in the fact that even though my pancreas is faulty, my heart is full.
 

New and old videos.

I’m talking old and new videos on this Friday… let’s start with the new:

New Videos
First, new videos. So new, in fact, that they haven’t been made yet. But a video will be made on Tuesday, September 15 at 4:00 Eastern time here in the USA. That’s when I’ll be talking to Rick Phillips of TuDiabetes. We’ll spend the better part of an hour talking diabetes, blogging, and whatever else Rick wants to talk about. I hope you’ll join us. CLICK HERE to find out more. When the time comes, CLICK HERE to follow along and join the conversation.

I’m really looking forward to this.
 
 
Now… old videos:

Old Videos
Back in April, I was lucky enough to attend something called the HealtheVoices Conference. It was a terrific weekend where I met many other people living with chronic conditions like mine. The interactions, the connections made that weekend are having a lasting effect on me (Diabetes By The Numbers), and this week, I was reminded of them again when these videos were released. I wrote about the weekend here. At the end of the conference, we sat down with an interviewer and answered three questions. The answer to those three questions, from many different points of view, is below.

Note: Janssen Pharmaceuticals paid for my travel, hotel, and meals so I could attend the HealtheVoices Conference. All opinions, as usual, are my own.

Why should you view these videos? Because you’ll see and hear people living with chronic conditions, many of whom are not living with diabetes, who are just as passionate about what they advocate for as I am about advocating for better access to care, treatment, and medication for People living With Diabetes. They are also reaching out and building communities and inspiring others, and I thought you might like to see who some of them are.

And hey… there are some DOC people in there too. In the first two videos, you’ll see the always compelling Christel Marchand Aprigliano. The last video starts with me, and also includes Karen Graffeo and Kerri Sparling, who always sound waaaaay better than I do.

When I saw my part, and saw that I was tagged as a Type 2 Diabetes advocate, I paused for a moment…

Then I realized, yeah, I live with Type 1, but I’m an advocate for all People With Diabetes, so if you want to label me as a Type 2 advocate, then okay… because I’m that too.

 

I hope your Friday is a good one, and I hope your weekend is full of fun and excitement. And good glucose. Remember:

I support you… no conditions.
 

Close encounters of the online kind.

Okay, so my offline life with diabetes doesn’t offer much interaction right now.

On the other hand, my online diabetes life is chock full of interaction.

In fact, it keeps me on my toes all the time.

I never connected with the Diabetes Community at all before finding the DOC back in 2011. Never even heard of such a thing. Now, there are many people who sort of live inside of my computer or mobile device, whom I read and trust and admire. And yes, interact with.

I write this blog for a variety of reasons. I write to add my voice to the conversation. I write to advocate so others can add their voices to the conversation. I write to inform, when I can. And often, I write just for me. Because I like to write. Because, when I’m gone, I hope to have left a sliver of what my life was like here in the 2000-teens, with Type 1 Diabetes as a constant companion.

So sometimes, I’ll write something just for my own sake, recounting things that make me happy, even if it doesn’t necessarily move the diabetes needle further toward a cure. Occasionally, in those moments when I worry that my mind will go at some point (Mr. Glass Half Empty), I take comfort in the knowledge that at least I’ll be able to go back and see who my friends were, even if I can’t remember all their names by then. I’ll just have to remember the web address. That’s what Favorites are for, I guess.

I can’t tell you how much fun I have moderating the DSMA Twitter chats every so often. Even when my brain is fried from a long, hard day at my job, in the middle of a cold, dark winter, when my day starts at 4:30 a.m. and DSMA finishes late on the east coast and I’m having trouble keeping my eyes open, I get such a kick from the thrill of a newbie’s reaction to being part of the conversation, or a timely wisecrack from a DSMA veteran (who’s also a part-time DSMA moderator).

It’s weird though. I consider most of the people I interact with online as my friends, even though I don’t know many of them all that much. When they are wronged, when people call them out online, when people try to shame or stigmatize their disease, what they’ve done or how they live their lives, I’m ready to defend them right away. Why? Because someone is trying to hurt my friends. You don’t mess with my friends.

Also, because they’ve been there for me more times than I can count.

We all engage in the ways that work best for us… or are most convenient for us. But together, all of us are part of a greater community (see what I did there?). Being part of a greater community carries with it a certain amount of responsibility. Not all of us have an equal amount of responsibility at the same time, all the time. It comes and goes, depending on a number of factors.

We also have varying amounts of opportunity, depending on a number of factors. I think of opportunity differently. When I have an opportunity to do something, I feel almost compelled to seize on it. Of course, not all opportunities are the same either. What I’m saying is, we’re faced with questions of whether to engage or not engage all the time.

It’s not about repaying a debt to the ether that I’ve somehow concocted in my mind. Again, it’s about being part of a community, being a building block of a group that makes greater things happen, not just by myself, but by holding up my part of the foundation of The House That Makes Life Better for everyone living with and affected by diabetes.

I may have more of an impact online than offline most times. That may have a lot, or very little, to do with me. But I’m happy to engage in any way I can, so all my friends living with and affected by diabetes can walk an easier path toward the future.

How is your online life different from your offline life with diabetes? Do you engage more either way? Do you like engaging more online or offline? Do you seize opportunities, online or offline, when they arise? What makes you say yes or no to these opportunities?
 
 
 

The DOC as an information source.

It’s easy for me to think of the Diabetes Online Community as this lovely group of people who advocate, support one another, and help others live better lives with diabetes.

What I sometimes forget, but can never underestimate, is the power of the DOC to inform and educate. Let me give you an example:

After working for my company for 15 or 16 years, I still hadn’t met one other person there living with diabetes. Now, after almost 17 and a half years, I know four.

One of those people contacted me last week to ask about the Animas Vibe system, the pump integrated with the Dexcom G4 continuous glucose monitor. They asked me if I had tried it, and if so, what I thought of the product.

I said that I had not, but had used an Animas Ping pump during a couple of clinical trials at the University of Virginia. This person was really looking to get first-hand knowledge of how the Vibe works and whether it was worth the hype. I then digressed into how awful it is that no insulin pump maker will let patients trial pumps anymore (lamenting the demise of the Snap), and how this would all be easier if we could just decide for ourselves, instead of deciding based on what a company rep or a doctor tells us. Digression is my strong suit.

But you know what? I knew that many people have used the Vibe system, and they’ve written about it, and it wouldn’t take too long at all to find a thorough piece on the subject.

In no time, I found this insightful review of the Animas Vibe by Melissa Lee at A Sweet Life. Sure, I knew that Melissa is knowledgeable and trustworthy, but even if I didn’t know that, her review was a very good one, and I think it’s just what this person needed.

I don’t know if this will help my friend decide on whether the Vibe is the right choice for them. What I do know is that I am often guilty of thinking about how I connect to the DOC, rather than how the DOC connects with me.

This is a good reminder of the vast treasure trove of information that we are all contributing to our community. People don’t have to always go blindly about the healthcare universe, not knowing about a product they and their insurance provider are purchasing until after they purchase it. Just knowing this information is out there already helps people make informed choices, rather than guesses.

Your story, your experiences matter. Sharing the stories of others and their experiences matter just as much. That’s been true since the earliest civilizations graced our planet so many years ago.

So today, let’s remember the power of the Diabetes Online Community as an information source. And let’s keep adding to the wealth of knowledge.
 
 
 

#DBlogCheck: Building Community.

It’s another D-Blog Check-In Day (for my previous thoughts on #DBlogCheck, see here and here).

Christopher Snider, who writes at A Consequence of Hypoglycemia, started this idea a while back. Basically, it’s a day where we’re less of a lurker and more of an active online participant in the Diabetes Online Community, by leaving a comment on every post we read on diabetes blogs, Tumblr, Instagram, and so on that we see.

If you read something today, leave a comment. Even if it’s just to say “check” or “I’m here”. Be sure to share and encourage others to do the same on Twitter and elsewhere by using the hashtag #dblogcheck.

It’s a way for us to support those bravely sharing their stories, a way to build community, and more than that, it’s a way to continue the dialogue among the vast hordes living with diabetes and helping those living with diabetes. That’s what I’d like to talk about today.

Writing this blog for nearly three years means that I’m not exactly a rookie anymore, but I’m not quite a seasoned veteran either. Even so, in the limited time I’ve been doing this, I’ve seen how the diabetes community has evolved. It’s true that the DOC is no longer a nascent community of random people shouting into the ether. Instead, it’s a vast interconnected network of people who know each other personally, know each other online only, or don’t know each other at all, but are nevertheless hanging on every word that is written.

Can you imagine what it must have been like in those early days? Writing out thoughts and posting them without knowing who was out there to see them? But someone did. And those initial readers responded. They connected, the same way you and I are connecting today. You know what? That kind of writing and that kind of response is still the basis of what grows the DOC, reaching more people, changing more lives.

Meanwhile, the community of it all has really grown in the last few years. Off the top of my head, I could probably list a dozen or more diabetes initiatives and organizations that have taken flight, including my own (notice the photo of the medals in the upper left corner of this page), through the sheer nature of someone raising their hand and saying I’m here, and someone else responding. How does that happen?

Through participation.

Through your participation.

Through your positive response.

It has all happened through your commitment to community.

As you comment today, think about what it means when you say “Yeah, me too”, and “Yeah, I think that’s a great idea”, and “Hey, what if you tried this”. Because while it still takes a great idea to start something, it also takes a great response to make a community successful.

So think about what your involvement means to this ever-growing community. What it means to someone who is finding their voice. What it means to someone advocating on your behalf before government officials. What it means to those raising money for an important diabetes cause. What it means to someone thinking about getting people together to encourage and support one another.

You, dear reader, are just as important as anyone else in our diabetes community. Let me take this moment to thank you for the insightful, inspirational, and encouraging comments you’ve left here so far. Let me also encourage you to continue to stay engaged with this wonderful community. You’ve made it the safe, empowering, and uplifting place it was long before I showed up. And you’ll make it the bigger, even better place it can be long after I’m gone.

Unless, of course, they find a cure first. Then you’ll have something even bigger to be proud of.
 
 
 

%d bloggers like this: